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Some PLHIV still unable to access ARV's even with drastic reduction in cost

by Simone Brown, Freelance writer

KINGSTON 16 August 2006 (Panos): Persons living with HIV and AIDS (PLHIV) in Jamaica are finding it difficult to fork out the J$1,000 (US$15) fee imposed by the Government to cover the cost for one month’s supply of antiretroviral drugs (ARVs). The drugs are provided under the Global Fund and Jamaica is the only Global Fund recipient to charge for the drug.

The burden imposed is evident in the little over J$1 million reportedly collected by the Ministry of Health in one year. This is less than 4 % of the targeted J$27-30 million expected to be collected annually from the 2,000 persons currently on ARVs.

But the small amount collected tells a bigger story. Although those who need ARVs can still access the drugs free once they are able to explain why they can’t pay, many PLHIV feel ashamed to discuss their personal situations. They therefore may stop their ARV treatment once they have no money. Even more people end up having to sacrifice other important things to get the drugs each month.

John, who is affiliated with the AIDS support organisation Jamaica AIDS Support, said the $1,000 charged for the ARVs act as a deterrent to many PLHIV accessing their medication on a timely basis or at all.

He explained that even though the medication can be had for free, he has to go through a lengthy process of explaining why he can’t afford the drugs. This, he said, is quite embarrassing for him and his colleagues many of whom don’t want to be bothered with the hassle.

"I am not working now, so $1,000 is a big cost knowing that you have to find proper nutrition and money for bus fare. It is hard and so sometimes I can’t go for my medication," he said.

He said he recently accompanied a friend to the Comprehensive Health Clinic in Kingston to get her medication because the Kingston Public Hospital (KPH) had run out of supplies.

"She was there for nearly the whole day and she had to go through a lot of hassle to get the medication. The lady wanted to know what kind of work she did and why she couldn’t afford it," John said.

"The next time she wants her medication if she is not going to get it at KPH, the place she feels comfortable, then she says she will just do without it until they restock their supplies because she can’t deal with the embarrassment," he added.

John argued that it is these procedures that turn off persons from getting their medication.

"People can’t be bothered so when their medication run out and they don’t have the $1,000 they just don’t go until they can afford it again," he said. He explained that once they start missing the medication, they are exposed to getting various opportunistic infections.

Jamaica received US$23.3 million from the Global Fund in 2003, with the bulk of the funds slated for treatment, care and support. There are 4,000 people in need of ARVs in Jamaica and 2,000 are said to be on medication up to 2005 (UNGASS report). The fee being collected is to be placed into a fund to provide the medication when the Global Fund money runs out.

Simone, who has been on ARVs since 2004, explains that while she would love to be able to support the fund, finding a $1,000 for the drugs when she does not have a daily meal is just impossible.

"I am glad that we can still get the drugs free of cost but sometimes you feel bad having to go back each month and explain to them that you don't have the money again," she said.

Maxine who says she has been on ARVs for the past two years, also supports this line of argument.

Over the last 24 months she says she has probably paid for the drugs four times.

"I just can't afford it because I lost my job because my health deteriorated and so I am scrambling to find someplace to live, send my two children to school, feed us and on top of that purchase medication," she argued.

While admitting that she knows she can get the drugs free, she says she finds it embarrassing to explain each month that she cannot pay.

Dr. Kevin Harvey who handles the treatment, care and support portfolio at the Jamaica National AIDS Programme said there are persons who want to pay the $1,000 and would even feel offended if they could not.

"There are a number of persons who can afford to pay and want to pay and some even feel insulted if we don't take the money," he said.

He however pointed out that some 95 per cent of PLHIV do not pay for their monthly supply of medications, and as such the amount of money in the Fund is very low.

He explained that in Jamaica's proposal to the Global Fund, they had proposed that this money would be placed in a fund or invested to ensure a continuous supply of ARVs.

"In Jamaica we have a health system which involves payment for services, so we thought that total exemption of fees for a unique set of persons such as those infected with HIV would automatically labelled them and caused them to be treated differently from everybody else coming to clinics,” he said.

He said the money collected has been placed in an account, which is being managed by the Health Corporation, which is the procurement arm of the government. He however reiterated that the fund was far below what was projected.

"There are 2,000 and odd persons on medication now. If all of them were paying we would have collected like $27 million or $30 million in a year," he said.

He said the money, which is now sitting in a bank accumulating regular interest will be further invested when it grows into a substantial amount.

"The Ministry of Health's, principal financial officer is the person who would decide once the funds reaches a level it will be placed in a fixed deposit or invested," Dr. Harvey said. He also pointed out that the decision for establishing the fund was approved by Cabinet and not by the Ministry of Health.

Rochelle, an adherence counsellor who works in the southern region of the island, feels the Ministry is doing the right thing to collect the fees.

"Sooner or later Global Fund will be out of our country and the money we give is not to pay for the drugs but to put it in a deposit so when they pull out of Jamaica we can still access the drugs. Or at least that is what I was told," she said.

But Nurse Daunett Wellington who works with the Jamaica AIDS Support noted that although the drugs cost only J$1,000, the organisation still has to pay for them, as their clients cannot afford it.

“It has helped significantly based on where it is coming from, but the J$1,000 is still beyond a number of persons,” Nurse Wellington said. “There are instances where some have to choose between buying medication or buying food. Most choose the food.”

As it relates to the medicine, Nurse Wellington explained that she finds it rather uncomfortable, when clients come to her with containers marked ‘not for sale’ and tell her it is supposed to be free, but they are being asked to pay for it.

A number of medical doctors who treat PLHIV and NGOs who support them reveal that they think that there should be no costs associated with the treatment falling under the Global Fund.